The journey of our family through the ups and challenges of raising a child with an Austim Spectrum Disorder. This is my journal. I write mostly for my own benefit and release. If someone else out there finds benefit then I am glad to share. For those who know our family personally perhaps this will help you better understand us and appreciate the boy who teaches us all so much more than perhaps we realize.

Sunday, October 24, 2010

For the most part, my life in the parent/teacher interview process has been this......"You are the parents we don't need to see."

We still go. It sends a positive message to the teachers and to our boys. We care. We are on top of things (I say that loosely). We aren't going to let our boys slip through the cracks. No slacking off, kidlets, the parents are present.

Jared's interviews are so very important. I go in and gather as much information as I can on how he is doing academically and socially at school. I can't be a fly on the wall at school and because of that I miss the majority of his social interactions with people outside of the "safety zone" of his home.

I was told he was adjusting well to middle school. Yes, there have been some issues with other kids and I am aware of some of them, but overall he's transitioned well to a new school, schedule, and educational format. He has his locker. He has five different teachers. He's making good noise on his trumpet. He's showing skill physically. He's learning the ropes and participating in class. Often he is right on subject and one teacher said when he's not he is easy to redirect. She also said what disappoints her is that his classmates don't give him enough credit and she's always so happy when he comes up with an answer that he can share and show leadership.

Aside from a full time aide, they try to modify his education as little as possible. He gets extra time for exams and they are done outside the classroom with his aide. When they see he is struggling, they modify for that particular exercise.

It's a good report, but I don't find any rest in it. I'm still vigilant that they are not pushing their agenda at his expense. I want to make sure that he doesn't lose his aide because Jared's doing so well in their eyes. Still, I am happy they challenge him. I want the bar set high. I do it at home. Tell me Jared can't do something and I say, "Lets try and see." He surprises us a lot of the time. It may not be perfect, but perfection isn't the benchmark.

Sunday, October 10, 2010

I remember when Jared was born. I was exhausted. I'd had contractions at 15 minutes apart for 4 days and there was no sleep to be had. Because of it he was taken early via C-section (it's the only way we have figured out how to get gigantic headed boys out of my body) and this little boy with a head of dark, dark, hair entered our family.

Never did I anticipate the life that was to follow. He was an energetic baby and toddler and we loved him. He never stopped entertaining us or making us tired. He was always the center of attention. Then we began to see signs that would be concerning, yet so hard to figure out and then came the years of trying to figure it out.

And diagnosis came. It didn't really change life at all except that life now had a name and acceptance had to come....acceptance in that I couldn't take this away from him. I couldn't fix it.

I've always felt that Jared was going to be a teacher to people. Today I told someone that Jared had an ASD and ADHD. She was surprised. She must have thought he was a weird kid. It's not like he behaves like other children. But Jared has all his limbs; he walks on his own; he can see and hear; he has no physically distinguishable features that may tell someone he has a disability. He teaches people that just because you may look "normal", it may not be the "normal" you identify with.

It's hard to be his mom. There. I said it. It's hard. That doesn't mean that I don't enjoy it. Nor does it mean I would ever choose not to be his mother. I love being "Mom" to Jared and I choose to think that only I could ever do the job.

I am so thankful for Jared and for the love that I feel for him and for the lessons of life that have come through him. Do I have days when I wish I could take this all away from him? Yes. I do. But the reality is that is something that cannot be taken away.

I am grateful that he has a Dad and three other brothers to also help him along the way. I am grateful that we are on this journey together as a family.

Sunday, October 3, 2010

Over the last few months we chilled and let summer take its course. Jared practiced middle school kinds of things like mastering combinations for his locker at school. He and I talked a lot about what to expect at a new school and figuring out which school supplies would work best for him and how many school supplies were too many.

We hiked less than I wanted to over the summer, but still squeezed it in. We had family come and visit. Bigger plans were scrapped because it rained every time we set a date.

He went through some anxiety ridden days. He survived basketball camp. He experienced negative treatment by a thoughtless few and it was witnessed by older brothers who didn't realize what Jared has to deal with from time to time. He had older brothers who stood up for him and worried about his first few days of school.

And school began.......no breakdowns. No tantrums. Some problems with other children, but we are educating him and them. He has an assistant who helps him in each class. He sees a school counsellor regularly. He asks to see her when he needs to talk. He eats lunch most days with his brother Jordan, who is doing his best to look out for him. Friendships are still difficult and that's not a quick fix, but Jared's managing best he can.

I would love for things to be even better, but I am happy with what we have. I wish I didn't have to deal with the sporadic bullying. It makes me angry, but the kids that are doing it have issues and struggles of their own. The "regular" kids are not the problem. I just stay vigilant and I speak out when necessary. Jared's safety and well being are my top priorities.

And so we move into the second month of school.........to be continued........

Monday, June 14, 2010

Kids go nuts in June. Everyone is tired of school and that goes for students, teachers, and parents. Kids act out more. I don't want to make any more lunches.

Jared is acting up. He's lippy, defiant, losing his temper.....but only at home. He is hating home big time right now. He loves school. He doesn't want it to end. I checked in on how things were going there and there have been no problems. I'm glad about that, but it makes me wonder if he's just acting out where it's safe or are we doing things differently and causing this behavior.

All the boys are done. Done. Done. DONE. There is stress about exams for James and Jordan, and I do give them some of that stress. I expect good marks from smart students and they are smart. It seems that every one is on some one's case. Now that I write it down, I see that we are a fertile breeding ground for Jared to go off the edge.

I just don't see how it can really be avoided. This is life.....at least our life. We try to keep life as simple and straight forward as possible, but stuff happens. While I would love life to stay safe and secure for Jared at all times, I can't shelter him from everything, right?

This year he did again. He did so well last year with all the work and preparation we did. I felt like he was just going to take off this year. Something unexpected happened this past year that affected my plans and while I was happy for that which was unexpected, it threw some things off.

When Jared ran last year, he was about 68 pounds. We could count his ribs. He was skinny. We attributed this to his ADHD medications. It affects his appetite and he ate much less than his brothers, who are much more solid physically anyway. Jackson was only about 10 pounds less than him and 2 1/2 years younger. The doctors monitored his weight and we always kept in mind that his meds had the potential to mess with his growth.

Well, Jared's little body did something these last few months. He got meaty. His face filled out. He's got a little belly. His body is looking like what his older brothers did at that same age.

He's been having trouble with the running this year. Jared can be very sensitive to body sensations whether they be from certain clothing, or glue drying on your skin. Jared's new body shape was not helping his running and he felt every bit of it.

At his last doctor's appointment Jared weighed in at 94 pounds. That is just over 25 pounds gained in a year!!!! No wonder he's having trouble this year. I think this weight has come on faster than his body could adjust.

I decided not to put him in the road race this year just because he was perseverating too much while on the course and I didn't want him to melt down during the race. We were both disappointed, but even he agreed that it was best.

From a larger perspective, I am happy to see my boy chub out. With my other boys this was the sign that a growth spurt was in the near future. Jared is on schedule and while he may not get to be as tall as his brothers (this would have been the case meds or not) I am glad to see that he may not be as behind in growing as I was fearing. It's all good.

So while the running may not have panned out like we planned, other good things made up for that in big ways.

Wednesday, May 5, 2010

September is four months away. For some that is a long way off. For me it feels like tomorrow and I'd better start preparing for it now, lest time gets away from me.

Jared is now nearing the end of his 5th grade year. This means that middle school begins in the fall. This means new school, new students, new teachers, school bus, various classrooms, lockers, locker combinations, really crowded hallways, and learning a band instrument (he picked the trumpet). I may not survive this. He probably will be okay.

He will probably be okay. That is what I keep telling myself. I do because I've already had a meeting with the middle school administration even though the transition meetings don't start till next week. I have already taken him to the school when the halls were full of kids. I have sat with him through a band class and the teacher was fantastic enough to let him sit with the trumpet players. The noise didn't bother him (yeah!!) and he's more excited about band than ever. I've acquired a lock that he can practice the combination on for the summer. It's not THE lock, but he'll get the gist of how to use one. I've set up an organizational system for his classes so that he has everything he needs without having to grab for things in a messy locker.

I am on this.

Jared's transition meeting is next week. I am looking forward to this. I actually feel really hopeful, because everyone, whether they know me or have recently met me, know that this little kid has parents who are totally on board his ship. He has advocates all around him and it will be hard for him to slip through the cracks because his mom and dad are on top of things. On top!!

I am proactive. I am a communicator. I am a resource. I am a sounding board. I have thick skin. I am Jared's mom. I want the best for him.

I'm also learning as I go. I still worry no matter how hopeful I am. I may have forgotten some things we need to do to get him ready. I am Jared's mom. I want the best for him.

Monday, March 29, 2010

Jared is preparing a presentation on Autism - his Autism. He's going to present it to his class this Thursday. World Autism Awareness Day is the following day.

We have been looking up information about Autism on the good ole Internet. We've been reading about symptoms and characteristics that kids on the spectrum may have. He's been amazed. He won't retain it all right now, but he gets what he does retain. He recognizes himself in some of the descriptions and feels fortunate not to see himself in others.

I've seen a sense of empowerment welling in him as we talk. I see confidence to share his struggles. I see understanding. I see a sense of hope.

My hope is that the classmates who know his struggles and support him feel a renewed desire to stay the course. I hope the fence sitters have a better understanding and perhaps one or two of them will want to become supporters. I hope the ones who don't care and will continue to be mean will be held to a higher level of accountability.

My biggest hope is that Jared will find pride in who he is and not be ashamed of his challenges.

As we talked last night we talked about how some kids have to live with their parents forever because they are unable to take care of themselves. He said, "Well I can't live at home forever. How can I go to school and find a girlfriend and get married if I stay with you?"

Tuesday, March 2, 2010

"Mom, are some of my challenges because of that Autism thing that I have?"

This is a question I have been getting from him on a regular basis lately.

While I knew that I would be dealing with these things at some point, I am surprised that it started already. Just a few months ago he seemed not too concerned if not almost oblivious to the whole thing unless things were not going well.

I took advantage of the moment and sent Jared off to talk with our therapist at mental health. We really didn't think that Jared would be asking so soon and thought we would have a few more years. The reason behind that thought was Jared's tendency to let things go and not always pay attention. But one thing about Jared - he never ceases to amaze us.

Jared's therapist and I didn't know how much he gleaned from their session together. With his ASD and ADHD combined it's hard to tell what he absorbs. He did get something though.

In church on Sunday, his teachers were talking about our bodies and how they are not perfect. Some are born with limbs that don't work right, or brains that don't work the same as others. At that point Jared piped up and said like my brain and my Autism.

Well, there you go, folks.

On a side note, I weighed Jared the other day and was amazed and delighted to see that he gained about 20 lbs over his 5th grade year so far. He's been chubbing out, which is a sign with our boys that a growth spurt is not far off. With the ADHD meds he takes I worry about his weight and growth pace and puberty timeline. At the moment it's looking pretty on schedule. I hope I am right and the signs indicate I am.

And with those advances comes the hormones and I think I need to find a good book and/or seminar to help me learn about ASD and the adolescent.

I can also comfortably answer Jared when he asks if his challenges are due to Autsim, "Some of it. A lot of it is just because you are a regular growing boy."

Wednesday, February 17, 2010

I've meant to blog recently, but I've been preoccupied. I fractured my wrist. It tends to throw life off a bit.

I've spent time hovering between feeling so great for Jared and how far he has come and how difficult and frustrating his life can still be. I see how he is handling himself in certain situations so well. I see how hard life gets when the people you want to be friends with do not want to be friends with you and are not always nice about it and how the middle school years will not always be kind.

I don't know how to balance my desires to protect him and his need to learn from experiences like his brothers. I don't want him to lose the resiliency that has gotten him this far.

It's a struggle not to dislike kids who make Jared's life harder and to understand that most of them don't know better or know how to handle interactions with him. As a mom you want the whole world to love your babies as much as you do. That doesn't happen.

So for every victory I celebrate, knowing that achievement was hard earned. Then I go back to worry. Worry that I can't save him all the time. Worry that he'll get angry about his lot in life. Worry that some one will hurt him. Then with that worry I get up and fight for him so that maybe one day I won't have to worry so much.

Wednesday, February 3, 2010

Cub Car Rally night. It's a big night for them Cubs. It's the showcasing of all the work the boys and probably mostly their dads have done to prepare for this big event. Jared's no different. This is his last rally and he was EX-cited!!!!Many kids who are totally in it for the win factor would probably get dear old dad to help them create something with some aerodynamics involved. Jared was TOTALLY in it for the win factor (though I did have a serious talk about sportsmanship and how that works, which led to the "I know, I know, like last year," response, which led to my crossing my fingers that he wouldn't be kicking and screaming by the middle of the rally). The secret to his success????? A warthog vehicle from Halo (the video game, for those scratching their heads).

Sean spent a good while getting this ready for the paint shop. I think Jared did a great job on the camouflage paint job. Just to get into the mood of things, I crocheted a camo hat for myself.Jared came in 2nd place for the evening. He did great. He stressed a couple of times, but was easily redirected. He was leaping everywhere, but didn't knock anyone out. He was the loudest, but we let him. All the boys were a little crazy; Jared just takes his to a higher level.

His Cub Car career is now behind him. The Warthog can be retired (unless we participate in the city-wide rally) and a gun glued to the top of it. One more thing to remind me he is growing up.

Wednesday, January 27, 2010

One of his classmates decided it would be fun to tease Jared. I don't know all the details and I don't know how many other boys, if any, were involved. The result was that Jared got very upset and overwhelmed and yelled at this boy.

He was supposed to do his timekeeper job today after school for a basketball game, but the school called to say that he didn't want to do that anymore because of this incident and I went to pick him up early.

I found him in the office with one of the teachers. He started to tell me what happened with tears welling in his eyes.

On the drive home Jared asked me what it was that his "challenge" was called again. He can't remember names like autism or PDD-NOS. Then he asked, "Mom, did you know when I was a baby that I was special and great?" I couldn't even speak. I was so choked up. I was driving a minivan, my son had just asked me one of those questions that almost kill you, and I was trying not to cause a traffic accident through my tears. I asked him to clarify "special" and he defined it as his unique challenges. I told him I did not know how special he was as a baby but I aways knew he was great.

He recovered once he got home. I think he just really needed a change of environment. It was one of those days when I wished I could just take all this away from him. I worry that when these things happen, though he talks about it, there are still parts of it that he internalizes or can't verbalize.

Sometimes I really want to hide him and keep him safe. We don't want to see our kids get hurt. But it's not realistic or right or fair. Still..........

Sunday, January 24, 2010

Jared and the Cubs Program do not always get along. Sure, Cubs is great. Cubs is welcoming. Cubs is a fun time. Cubs can be overload sometimes.

Lots of little rambunctious boys plus no one to keep both eyes on Jared makes some Cubs evenings an exercise in futility.

I don't blame anyone for that. Jared needs special attention and he can go stretches where he does great. Then they play a game and Jared gets frustrated and he freaks out and if someone is in the wrong place at the wrong moment they might get hurt.

This happens rarely, but it has a couple of times. So I asked and begged for an assistant just for him. On Tuesday Jared will meet him. I've talked to him about what to expect. I've talked to the assistant about what to expect. I've prepared a bio of Jared filled with all sorts of interesting tidbits and deep dark secrets (well not really on that last part) to thoroughly scare this guy to death. I added triggers to look for and strategies to help and now I am going to pray this all works so I don't have to "ban" Jared for a few weeks from Cubs and he can have a smooth remainder of the year.

Jared decided that it was too embarrassing for his mommy to be there with him. I can respect that. He's also the oldest cub and with his tendency to act as mature as the least mature child present tends to make him look a tad awkward to everyone else. He does the best he can, but hey, don't they all.

Jared has also started singing in our church choir. Since I am the director, I decided to drag him along. He's doing well now that we've eliminated the Jonas Brothers singing style and full blast singing voice. He's got a beautiful voice and over the last couple of weeks people have approached me to tell me so. He seems to really enjoy it so I'm determined to take full advantage while I can. A bass playing singer. Sounds good to me.

Wednesday, January 13, 2010

Jared is like many (perhaps most) folks with an ASD when it comes to creating and maintaining friendships. Very often there is a crash and burn component to the formula and it is always a work in progress.

One way Jared is slightly off the ASD norm is that he is extremely social. He wants friends. He really cares that he does not have many or any at all. He often feels isolated, but he goes out there and keeps trying. He doesn't close himself off and spend time on his own. He's out there. He's working the formula and he crashes and burns a lot.

When Jared chooses friends, those "choices" don't always realize they have been picked and of course don't always want to be the chosen ones. As Jared and these chosen ones get older, the more hurtful it is becoming. Jared picks boys who seem very strong and confident. I get concerned because they also seem to be the ones who treat him the worst.

A few months back, Jared was having issues with a boy who was in general terms a bully. He was not nice to Jared and indeed I was having concerns for his personal safety. Interestingly, Jared still called this boy his friend. I finally told him that friends don't say bad things, take things away, threaten others, and be disrespectful. That had never occurred to him.

On the flip side, the other day Jared was having problems and getting rather upset. Some girls came over and helped him settle and calm down. He complained to his teacher that he had no friends. His teacher pointed out these girls who had helped him and that they were friends. Jared's reply to that was, "But they are girls."

One of the things we as a family are learning, is that some people for Jared are a means to an end. What I mean by that is he knows he needs and wants friendships, but instead of cultivating those relationships and seeing if they lead to friendship he picks people to fill the slots. They are in essence objects that serve the purpose of filling the friendship pool.

He does have connected relationships with some people - his family, his teachers at school from this year and last. Friendship is still a bit of undiscovered territory. He's still filling the slots.

Friday, January 1, 2010

It's been a long time since I danced. Before marriage I danced a fair bit. So did my husband. After we married....not so much. I guess we didn't have as much opportunity and we got our guy/gal.

Now fast forward almost 15 years. James is now going to church youth dances and this has set off a new dynamic in the household.

Last night while he was partying it up at a New Years dance, Jared spent a portion of the night talking about when he will be old enough to go to the dances and dance with girls. In my head I was thinking thank goodness we have 3 1/2 years to work on this.

Our elementary school held a family dance last year. Jared and Jackson took a stab at dancing. Jordan was too cool to dance. Jackson finally chickened out. But Jared......wow.......he was a spectacle. He took his dancing seriously. In a gym filled with over 300 people, he created a perimeter and danced like one of those kids off "So You Think You Can Dance" meeting Napoleon Dynamite. People were watching. He loved that. People kept their distance. He didn't notice that. He needed the room. There was a lot going on.

So last night we started talking about these future dances and dancing with girls. He showed me how he would dance with them.

Him: "How was that?"

Me: "Energetic."

Him: "Did you think that was awesome?"

Me: "Yes, and I think we will have to practice dancing before you start dancing with some girl."

Him: "Why?"

Me: "Well, dancing like that........you may knock her head off."

Him: "Oh. Can you teach me some moves?"

Sean found us some music to dance to and dance we did. Jackson showed us the fundamentals of the "robot" which I never knew he could do. Jordan looked at us like we were crazy. Sean just sat there in his chair, because. Jared and I started. I think I want to show him the scene in the movie Hitch where Will Smith is teaching Kevin James how to dance. Anyway, he was a model student and when he would suggest a move a girl would be more impressed with - his arms and legs swinging around "like this" - I would gently imply that she would need a helmet and body armor to survive - though not in those exact words.

Jared is such a social little boy. It serves him well and it bites him in the butt. It bites him mostly because he gets into situations that he has not been coached on and then things don't end well. I am actually really happy that he is already looking ahead with anticipation to a time when he will be socializing in a whole new way and that he is willing to prepare for it now.

It seems so often we are training and learning reactively. I like to be more proactive and so this was a lot of fun last night. We were doing important work and it was enjoyable at the same time.

He can dance in the privacy of his own home like a man with eight limbs. We all can.....and some of us do, not just Jared. But in 3 1/2 years I think we will have him ready so that safety gear will not be needed.